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Sunday, 25 March 2012

Do labels help? Children with difficulties.

This morning someone I tweet with introduced me in a tweet to a lovely lady who has a child with SWAN.

SWAN means Syndrome Without A Name. It means that any person without a known disability involving a chromosone defect is called SWAN, lumped together into one category. We don't know what is wrong so we will diagnose you as SWAN.

But what does it mean? How does it help?

I have a problem with SWAN and it is something I've experienced. In fact I don't just have an issue with the label SWAN I have an issue with the label Learning Difficulties also.

My step daughter has been labelled SWAN, she has learning difficulties, as does my youngest child who isn't SWAN.

My son is dyslexic, my step daughter has a chromosone defect, she is unable to toilet, communicate (verbally, PECS, sign language, make eye contact) she requires 24hr supervision, she is a danger to herself and to others, has no awareness of something being sharp or hot, she will react if she touches the hob, but she will do it again next time as she does not recognise that it will be hot and it will burn. She is unable to tell you if her tummy hurts, if she is happy or sad, she will cry or laugh for both situations, she is agressive but it is not intentional. She has no long term health problems.

So what is the benefit of her being diagnosed as SWAN? None as far as I see. My sons diagnosis of dyslexia means he will get appropriate support at school, dispensation during exams and if we lived in the UK, funding for his needs in school.

My step daughters learning difficulties are obvious, her funding is secure, she's unable to do anything, she does not require support, she needs it doing for her. This was pointed out after a funding review, where the carers were PC and said 'she needs support chosing what she wants to eat' she will eat what is put in front of her and everyone elses on the table, she will grab a lemon, bread, a raw potato and eat that, she cannot open a cupboard to grab a bag of crisps, in fact if you give her a bag of crisps, they make a lovely sensory noise until the bag bursts over the floor.

We have many friends with children with learning difficulties similar to the level of care my step daughter has and similar to my son in regards to the level of support required and the costs involved.

My back ground has been teaching and support with adults and children with learning difficulties to main stream adults and children with additonal support required for their learning and with people who want to train to work with people with learning difficulties.

I have been told by a few people that as I'm not the birth mother, I don't know what it is like feel so isolated from everyone else having such a profoundly disabled child, it was easy for me to pack her off aged 12 into residential care. And they are right, NO I DO NOT KNOW HOW IT FEELS. HOW COULD I?

But I do know this and I can share it with you. Having a child with any kind of difficulty is hard, having a child without a difficulty is just as hard.

I have been at both ends of the stick,

'Do you think it was any easier to pack a disabled child off to residential school, as the wife of her father, as mother to all our children?' Which school? funding? dealing with other peoples attitudes?

'Do you think it is easy to get a diagnosis for a child with dyslexia, navigating your way through a sytem that wants to throw you out at every step?'

'Do you think it was easy to move to South Africa and leave my 18yo son behind in the UK, he'd only left home 4 days before we were asked to move here?'

'Do you think it is easy on the other siblings to spend their lives being told, we can't go on holiday/to the theme park/have friends round/have a party for new year? as it's not fair on your sister, she'll not sleep/will pull someones hair/will take food off people's plates in the restaurant.'

Many of our friends haven't sent their children away, they've not judged us, they've just said they can't do it. Many have and regretted it, many have waited till their child was older and regretted not doing it earlier.

I've been involved in placements for children with difficulties, I've supported parents through the process, I've prepared children for the move, with visits and flash cards and journals made together. I've worked in family support, as a foster carer providing respite for families, I am a mum.

The one thing I can tell you is that giving a child a label makes little difference, few people without any knowledge of learning difficulties won't understand and even if you do have a child that falls into this category, it makes very little difference to how people respond to you.

I don't believe in giving labels because every child/adult I've ever met is different, they have different needs, they have different family backgrounds. We have 5 kids, they lived with us. I gave up work to look after my step daughter, it didn't help. She went into care, it was not a decision made lightly. We all benefitted.

She can sleep though noise now. So we had friends with their kids over when she was at home on the weekends. We had New Year Eves parties that she was part of. We took her on holiday because she could now sit in a car on longer journeys without trying to get out of her seat belt and crawl into the front. We could go out for meals as she stopped grabbing food off other peoples plates. We enjoy every second of the time spent with her and are sad when she goes home.

Being labelled as SWAN has made no difference to her life or to ours. What made a difference was just accepting her as she is, the limits on ours and her life. Accepting that so called friends who found it difficult being around her were not worthy of being our friends. Acceptance that aged 24 she wouldn't be living at home any more and we'd have had a whole different set of issues like each one of our 4 boys has provided us with. Acceptance that she is our only child who's future we don't have to worry about. Who doesn't miss or need us since moving to South Africa, but is pleased to see us when we go home to visit her, 4 times a year. (We see the other two children 5 times a year and tha's only because they are capable of flying out to visit us).

Every person is an individual, every family is unique. Each situation is affected differently. There is no 'severe' difficulty there is just how each difficulty impacts on the individual, the family, society to various degrees and how you you and everyone around cope with it.

17 comments:

I'm very glad to have found you on twitter, especially as you are very clear about your beliefs and obviously have a lot of experience. For me, special needs is far more often about asking questions. I like being involved with SWAN because for the first time I'm in regular contact with other families who have children with some of the same difficulties as mine. Sometime i can help them too, and give them hope for the future as my child is 15 and theirs are often still very small. And down through the years unch of the information about services, equipment and therapies has come from other families, whether in real life or on line, and giving my children labels has enabled me to find useful and appropriate help and advice. Labels are also needed here in Ireland in order to get services, they have to tick a box somewhere!

I didn't meet my step daughter until she was 11 and she was already 'in' the system, the information for services, equipment and therapies came through my work experience, coupled with what knowledge my husband had gained it we were able to make the right decisions about her future together. I know I was the more pratical one as I had the detachment and experiencing the parenting role also has enabled me to be more realistic with other parents about the whole process and the complications of having a family with a disabled child.

I agree with everything you say, but I still think labels can be helpful for a parent to feel part of a "network", to help people find eachother in cyberspace. Even if it's as simple as knowing what to type into google! The whole labelling thing is a very itneresting one. Right across the other side into sexual labelling. gay/straight/bi - are these categories or is sexuality a line along which we all sit at different points? So what is the point of categorising it? I think it's about identity. You may not need the label, your step daughter may not need the label, but perhaps someone else with unidentified problems but who has enough awareness to understand some of their own situation might benefit from a label.

This is a very important debate, and I'm glad you've brought it up, however I would be hesitant to call SWAN a 'diagnosis', because it isn't. SWAN is a project set up by the genetics alliance to bring together families who don't get any support anywhere else (as generally getting a diagnosis brings you in contact with charities or organisations associated with that condition/syndrome etc). Seem in the light it is actually intended and it is less a label and more a way of identifying other children who fall within this limbo catagory.

For most people the 'not knowing' part of finding out what is wrong with them or their children is the hardest part of living with an illness or a condition. These families are stuck in that perpetual limbo, and to have no support and to not have an outlet for those worries or fears is incredibly isolating and scary. The SWAN project is a good thing, trying to fill a gaping hole for these families. You should check out the facebook page and it'll give you an idea of the kind of support these families give each other http://www.facebook.com/groups/205554229483224/

like I said in reply to 'looking for blue sky' my step daughter was already part of the system before SWAN. I have no problem with any organistion that provides support, we were fortunate in that I had worked in this area for 8+years before meeting my hubby so I had a wealth of knowledge and contacts in the system, for those that don't then an organisation like SWAN is brilliant.

Hello, firstly SWAN is not a diagnoise, it's a Charity started by the GA to help Mum's like me, to give us a community of support, my son is a SWAN and I am proud of that fact, he has no diagnosis and 99% chance he never will, but saying he is a SWAN is something I can tell people on the street that constantly ask, I can list his in excess of 100 medical/developmental issues they don't undertsand, but I say Syndrome Without a Name and they don't glass over. SWAN - gives me a place to talk about my little boy, somewhere that understands my day to day, when your child has a label as you said like dyslexica they get help, I have an autistic brother, dyslexic brother, autistic cousins, so I know this and it works well, but my little boy is starved of help as noone knows how to help him, how do you help someone that has no diagnosis they say, that is wrong. SWAN UK gives me a voice, helps me stand up and fight.All I want for my son is the support and help he deserves, dream world, I would love him to be healthy, part dream world a diagnosis so I know a rough idea of our future but real world just to be happy and supported.

On the subject of people saying you don't undertsand as you are only the stepmum I diagree on so many levels, you look after your daughter just as much as her father I am sure why is this any different. My step parents have the same love, care and concerns as my parents do for their Grandchild. x

SWAN is a support group and a voice for the many children, adults and their families who have disabilities without a known cause, or a medically documented syndrome. Raising awareness and understanding among the general public, medical profession and service providers (education etc) is vital if those affected are going to be supported in society rather than sidelined and ostracised. There is strength in numbers. Just see, by comparison, what the Down Syndrome Association has been able to do to change perceptions and support families affected by DS.

Without a 'label' it is difficult to a) bring everyone together, b) get your voice heard in the right places (e.g. media).

It is also very helpful in assisting friends and family to understand that your child does, in fact, have a number of disabilities and isn't going to 'get better'. And no, it's not all in my head ;)

I hear what you are saying, I just think there is a danger of the child being forgotten and just another stastic, give them a label and forget about them. I do see the benefits of organisations like SWAN and it was not my intention to belittle such an important organisation.

My youngest son is dyslexic and my eldest dyspraxic/dyslexic - the only thing with the 'labels' for them is that it's helped them to understand that they're not stupid, and in fact the educationalist reports proved the complete opposite. However, when I tried to obtain financial help to give them extra tuition and laptops it was not available until they reach further education. This seems like a complete cop-out to me as without the help early on they may not get as far as further education! Luckily I had family help and we managed. I didn't find the schools helpful either. Hard work on their part has helped them and I'm proud of them both.

we had to withdrawn our youngest from state school and move into the private sector, testing for dyslexia in the UK is really done until the child is 11, it's all to do with statementing and funding. Unfortunatley it's often too late, or is harder for the child to be made to wait so long. I'm pleased to hear that your children's hard work is paying off. We are having to go through the process again as we are now living in SOuth Africa, however the testing is the same as the UK.

I think diagnoses have their place (and whether SWAN is a support group or a "label" it is still a category of person), especially where they help us to get better support and services for our children. Where a label/diagnosis falls down is when people assume ALL people with a specific label will react in a specific way and need exactly the same support/treatment. In that case, a label can be a hinderance and instead we need to do as you talked of and look at the child & family and their actual needs.

To me what you said is very interesting and I would like to have my say.1. Labels are necessary but dangerous. In Australia you need the Autistic label, because it is coupled with government support BUT if you say are labelled (mistakenly even) having 75% IQ the test result and 'label ' goes with the child until adulthood. (there is a lot more about the subject it would require a thick volume.)2. I personally never came across SWAN, therefore I am not able to comment, however I am involved in our firm, which is dedicated to helping with learning difficulties. Most of our help is free and we can and will help with both dyslexia and dyspraxia. Find us on the web jayseducation.com; questions learningdifficultieshelp.info.

I have an undiagnosed child and get wonderful support from the project SWAN, part of genetic alliance. I understand your concern about labels, it suggests that everyone with that label is the same, but parents of children with any diagnosis will tell you this isn't the case, no two children with autism are identical, nor with down syndrome nor indeed are any two typically developing children! Swan doesn't offer a label, or a diagnosis, but it is a great way of explaining that there is an unknown genetic basis for my child's needs. People aren't always familiar with chromosomes, much less so 'a complex, apparently balanced karyotype' (my son's medical way of saying swan) but syndrome is a familiar word to many, it explains that it isn't something he can grow out of and helps answer the difficult question I get regularly: what is wring with him? I can say he has a syndrome without a name. I am not labelling him, or pigeon holing him, he is very different to renata's on, blue sky's daughter and kara's son, but I can feel part of a community that understands many of the difficulties we face without a diagnosis, be that from an educational or health point of view, access to services or concerns about the future.